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Profile picture for etandme0983 @etandme0983

@cec2
thank you for your thorough reply. I was diagnosed with jak2/ Et and had a bone marrow biopsy to rule out other cancer ,( which was a breeze ) . I started on Hydrea 500mg daily (after my platelets climbed to 600.000 ) and a baby aspirin in January of this year . I had very few side effects ( severe migraines were the worst ) ; then in August I began to experience constipation , and bloating( my belly was distended like I was 5 mths pregnant ) . I cried when I couldn’t even button my pants , so I attributed this to the Hydrea . I restricted my diet to one meal a day, exercising more , and eating very healthy to no avail . I discussed this with my H/O ,and she wasn’t willing to decrease my dosage or number of days that I took H. She almost dismissed my symptoms saying I needed to see a GI Dr, and colonoscopy because “most people “ tolerate Hydrea?? . I was tested for thyroid TSH and all normal . After several other medication were suggested ; Analagride ($200/mth after Medicare and supplement ) ) and Interferon ( a shot in my belly once a week and very expensive) , I decided to just monitor my platelets with my PA and take 2 baby aspirin . My platelets have risen from 350 to 460 , but my side effects have all subsided , but another TSH test recently indicates extremely low levels levels , which I will address with PA tomorrow . Might still see a GI also , as in the past I have had IBS from stress .
This diagnosis is forever and everyone is different . I do believe your H/O should address side effects ;,not just focusing on lowering your platelets.

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Replies to "@cec2 thank you for your thorough reply. I was diagnosed with jak2/ Et and had a..."

Yes, docs need to do way better with side effects. Probiotics helped me with gas/bloat.